Restless Legs Syndrome (RLS) Discussion Board

Sunday, November 1

Welcome to

Catchgina, whose 8 year old son has RLS and she wants to connect with other parents, as well as learn more about the condition. Her husband has a mild case but his mother has it much worse.

As you have already figured out, RLS has a genetic component. Take a look through our Special Populations forum to get an idea about pediatric RLS and feel free to post a note with any questions that you have so that other parents can try to help you out.

Sunday, November 1

Welcome to

Logs, whose RLS has affected sleep cycles even with medication. Logs restricts social events in the evenings as RLS is worst during the evenings and night.Travel has been the biggest challenge, especially long haul, with multiple destinations. Logs avoids touristy places, preferring quiet holidays or retreats.

If you have any questions or would like some personalized suggestions, all that you need to do is post a note and let us know how we can help you out.

Monday, November 2

Welcome to

marciwhite, who was diagnosed with RLS in 2014. Her father and sister have also been diagnosed with RLS. Although medication helps, she does not enjoy going to the movies and has difficulties during long car drives and flights.

Movies, flights and long car drives are problems that most of us face. One trick is to get your doctor to provide a prescription for Carbidopa/Levodopa for VERY occasional use. It is fast acting and effective, but can cause rapid augmentation if used regularly (but is usually okay for a couple of times/week.

Monday, November 2

Welcome to

Mlinnstad, whose RLS is severely impacting her life, for the most through part sleepless nights and an inability to work.

We can all appreciate the struggles that you are going through. If you are comfortable with telling us what you are doing to manage your RLS, we may be able to offer some suggestions that could reduce your struggles.

Tuesday, November 3

Welcome to

kailuagirl808, who has struggled with RLS for most of her adult life. A day never passes that she doesn’t suffer with extreme augmentation and frustration. She hasn’t had a good nights sleep in years and would give anything to just live somewhat normally without this disease.

There is no reason to live with augmentation. If you are currently taking a dopamine agonist, you need to get off of it and switch to a different form of treatment. And if your doctor doesn't know how to do this, then you need a different doctor. We can help you through this if you are willing to post a note telling us a bit more about what you are currently doing to manage your RLS.

Tuesday, November 3

Welcome to

Angela.levy, who was a teacher and had to resign due to her severe RLS.

We are sorry that you had to quit your job due to RLS. There are ways to manage that might allow you to return to work. If you are willing to post a note to tell us a bit more, we may be able to offer you some suggestions that could allow you to resume a "normal" life.

Tuesday, November 3

Welcome to

LanaCSR, whose RLS has ruined her life. She lives in the Charleston, SC area and cannot find a Dr who understands and successfully treats RLS nearby.

Many of us have to travel in order to see a doctor who understands how to properly treat RLS. In your case, the nearest Foundation Quality clinic is in Atlanta. Granted that is quite some distance from Charleston, but we have members who have flown from the Northwest to Maryland, from Chicago to LA or from Idaho to San Diego just to see their doctor.

Thursday, November 5

Welcome to

SoniaBrock, who has had RLS for a long time but didn't know what it was until she attended a Sleep Clinic. She spent a night hooked up to wires and in the end, was told she had RLS & was prescribed a Parkinson's medication which did not work too well. In Canada, where it is legal, she is now on medical marijuana prescribed by a doctor. It helps a bit.

A number of us use marijuana and it helps. If you have any questions, feel free to post a note and we will try to help you out.

Thursday, November 5

Welcome to

rls823, whose RLS causes rls823 to be up 5-6 times a night, to be chronically tired and causes heart palpitations when not getting enough sleep.

Sleep issues are one of the primary complaints for those of us with RLS. If you feel comfortable with posting a note to tell us what you are doing to manage your RLS, we may be able to offer some suggestions that will help you get more (and better) sleep.

Friday, November 6

Welcome to

Rest, whose partner's RLS over the past year seems to becoming more insistent. It starts earlier in the day and requires a higher dose of ropinerol.

Those are usually clear symptoms of augmentation, which indicates that there is a need to get off of the ropinerole and move to something else. If you would like more specific comments, you can post a note telling us about the dose and how long your partner was on ropinerole. You can also look through our forum on augmentation to get a clearer idea of what the two of you face.

Friday, November 6

Welcome to

retiredfg5, whose RLS is a 24/7 condition where sometimes, even on medication, Her legs twitch so bad retired has to get off the couch, go out the front door and start walking. She has often said that of the 15 medications prescribed, if she could only take one, it would be the Mirapex, which she can no longer get nor is it working any more. After reading through the board for the last hour, it brought her to tears to find out that we are not alone.

We are very glad that you found the discussion board and look forward to having you join our discussions. If Mirapex is no longer working, then you could be starting to go through augmentation. If that is the case, then you need to get off of it and switch to a non-dopamine type medication. If you are comfortable with telling us a bit more, such as the dose that you were taking and how long you were on it, we may be able to offer some suggestions of how to proceed from here.

Thursday, November 12

Welcome to

rmamartinez, whose quality of sleep is awful and energy during the day is limited. rmamartiinez is more anxious and worried about the long term effects of sleep deprivation.

We would be happy to provide you with some suggestions for improving your sleep. If you will post a note telling us what you are doing to manage your RLS, we can offer you some suggestions to improve.

Thursday, November 12

Welcome to

franmorg, who has suffered with RLS for over 50 years, but was just diagnosed in last 30 days.

We would be happy to provide you with some suggestions for improving your control and answer any questions that you have.

Friday, November 13

Welcome to

TIghtankles, who has RLS/WED and it is increasingly becoming difficult to get a good night’s sleep. Tightankles is interested in hearing from others who cope with it, especially those who are not using dopamine agonists. Thank you in advance for making this forum available.

We are glad to have you with us. You will find that most of us are post-DAs with our treatments and many of us use a combination of medications to manage our RLS/WED. We would be happy to share our experiences if you will just post a note with whatever questions that you have.

Friday, November 13

Welcome to

jdusaf, who was diagnosed with RLS in Oct 2020, can't sleep, and has constant limb jerking. A forum with support and ideas to help on the journey to taming this is what jdusaf was looking for.

We are definitely that forum and would love to have the opportunity to suggest things that will get your RLS under control. You can either post a note with any questions that you have or post one telling us a bit about what you have tried so that we will know where to start.